Hello, our son has terrible neck pain and keeps looking at his hand and running it saying its numb in the palm, plus hip and groin pain and a bad headache top and front (other than that he’s fine lol). He has a bad head cold that’s going around and we fell he may have done too much (ie played like a normal 8 year old) and our ns told us that any inflammation in the body, even the common cold, can trigger chiari symptoms for at least two years post op. His last surgery was in January 2012.
We think it just needs to ride out like any of his “flare ups” for lack of a better phrase but thought we’d check in incase someone had any specific insight and thought it might be something more.
THANK YOU SO MUCH FOR RESPONDING! Sometimes I think I need to be on a different support our out just for mothers with children with chiari, either that or Gavin’s symptoms don’t Mitford others, OR I am not succinct enough in the questions I pose.
Are you definitely getting surgery? Gavin is not better:( his neck and the back of his head hurt terribly in a hard, squeezing, pumping motion he showed me in my arm that hurt!! He has two pockets of fluid from a leak, one they call a psuedomeningocele and it’s puffer and more prominent than I remember. It seems he is able to manage his pain if he does NOTHING, no movement, especially up and down, at all without suffering.
He is having an issue where he feels he is not moving his bowels as much as he thinks he needs to and I feear things like tethers cord and syrinx. The neurologist wants his to see the ns and get an MRI so that’s next. Thanks, Regina